Tales from my eventful and ongoing journey as a Generation X caregiver for my father and as an advocate for Lewy Body Dementia caregivers.

Sunday, October 27, 2013

English Experiences, Part I.

My husband and I just got home from an extended stay in
London, England.It was a truly great
trip, and I have to say I’ve come back changed, even if just a little – the result
of living in and experiencing a different culture, and dealing with my chronic
illness, and duties as a caregiver while being there.The purpose of the trip was partly as
vacation and something we’ve wanted to do since we met, but it was also something
of a working holiday for both of us.I
went with the desire to see the dementia/caregiver/aging/disabled person/hospice
experience in the UK, and how it might be different.I’ll be writing several blog posts about my
adventures.

In the last few years, pretty much since I became Dad’s
caregiver, I’ve worried every day about getting that call.It’s something every caregiver can understand.We all flinch just a little whenever the
phone rings, because we’re worried its going to be about our caretaker in some
way – some person to tell us the worst has happened and our presence is
needed.Every time I’ve gone out of
town in the last seven years, I’ve toted my phone with me everywhere, and have
quietly dreaded getting the call – and, occasionally, I have.On my first Thanksgiving with my
then-boyfriend’s family, I got the call that Dad had an infected boil and
needed emergency surgery. On the trip
to Hawaii when I got engaged, I got a call about another illness Dad was
suffering – fortunately, this one was less severe, but it still affected the trip.

The entire six months that we spent conceiving of, planning,
and organizing this trip, I thought about Dad and what I would do if I got that
call.I thought about how I would go
about arranging for a phone so his caregiver could contact me, and what I could
do in an emergency if I needed to fly home.This was a wonderful trip of a lifetime that I was planning, and yet I
couldn’t enjoy the prospect of it fully because I was always thinking about
worst case scenarios.

When we got there, I got a UK SIM card for my phone within
hours of landing so that I could receive calls and check my voicemail until
such time as I could contact Dad’s caregiver with the number.When I did finally reach him, I felt some of
the weight slide off my shoulders, knowing that he could now talk to me as
needed.But the weight never fully
slid.Every time I checked my voice mail
and there was no message, I breathed a sigh of relief – until the next day when
I checked it.Every day that went by
without a call about Dad, I was happy, until the time when we were getting on
the plane to fly back home.In the end,
I never got the call, for which I am deeply grateful.I am also deeply grateful for the wonderful
care he receives that made it possible for me to even contemplate going so far
away.

Being a caregiver with a loved one always on my mind
certainly didn’t ruin our trip – I still had fun and learned a lot – but it
absolutely affected it, and I know this will be the reality for the rest of Dad’s
life.I’m still waiting for the call – I
will until Dad leaves this world – and I know caregivers everywhere know
exactly what I’m talking about.

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LBD Caregiver Link

LBD Caregiver Link

Toll-free LBD Caregiver Link – 800.539.9767

LBD families and caregivers can connect directly on a regional basis, through the LBD Caregiver Link, featuring “Lewy Buddies.” “Lewy Buddies" are experienced LBD caregivers who share their time and experience with LBD families by:

vListening compassionately and confidentially to the challenges of LBD families and sharing their own personal experience with LBD

vOffering emotional support

vReferring families to additional LBDA programs and services as appropriate for their needs.

While Lewy Buddies are not able to provide medical advice and are not medical professionals, they are typically well informed about LBD through their personal experiences and volunteer training with LBDA. They may also be able to help identify information and community resources concerning the diagnosis and care of a person with Lewy body Dementia.

When calling or emailing the LBD Caregiver Link, you will speak with an experienced caregiver who can provide information on LBD and who can also share their personal experience and compassion.Please leave a message and an LBDA volunteer will return your call within 24-48 hours.

"Our deepest calling is to grow into our own authentic self-hood, whether or not it conforms to some image of who we ought to be. As we do so, we will not only find the joy that every human being seeks -- we will also find our path of authentic service in the world." Parker J. Palmer

FEATURING:

Toll-Free Hot Line at the AFA (Alzheimer's Foundation of America)

1-866-232-8484

Compassion. Knowledge. Care. That's what AFA's toll-free hot line delivers. When you reach out to us, licensed social workers and other professionals knowledgeable about Alzheimer's disease and related illnesses will answer your call. They will respond to your questions and direct you to appropriate local resources to meet your needs. No question is too small; no concern is too insignificant.

AFA's toll-free hot line provides information, counseling by licensed social workers and referrals to community resources across the nation.

The hot line operates during regular business hours—Monday through Friday, 9 am to 5 pm (ET). During these hours, social workers are available by phone, as well as via Skype and live chat; to connect via Skype and live chat, click here. At all other times, please leave a message and we will return your call. To ask a question via e-mail, click here. If your situation is an emergency, please dial 911 when appropriate.

***************************Care Connection Teleconferences with the Alzheimer's Foundation of America.

Care Connection Teleconference

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Welcome to Full Life Care – formerly ElderHealth Northwest. Full Life helps adults of all ages with chronic illnesses, physical or developmental disabilities. We are a not-for-profit organization dedicated to improving people’s lives and supporting caregivers. Since the 1970s, we have helped thousands of individuals preserve their dignity and avoid living in a nursing home or in isolation.

This is a great organization. My Dad visited them for years and got a lot of support through their Men's Support Group. I highly recommend them for help and support of your loved one.

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The Alzheimer's Association's Helpline is a toll-free number that you can call 24-hours a day, 7 days a week to get information about Alzheimer's disease. Through our National office, we have the ability to serve individuals in 140 different languages by accessing translation services.

Call 800.272.3900 to speak with a trained Helpline specialist who will provide emotional support and appropriate referrals to local resources in the 23 counties served by the Association. All calls are confidential.

About Me

I'm a writer, caregiver advocate, hospice/bereavement counselor and care manager for my father, who suffers from Lewy Body Dementia. I think it's important to talk about caregiving from my point of view as a member of Generation X. I also think it's important to spread the word on what Lewy Body dementia is, and how to deal with it effectively.
Some names, dates, details have been altered due to memory discrepancies, to maintain privacy, and to ensure narrative flow.